[mhnevillParticipant]

Hi Tina

So glad to hear you feel you have turned the corner after such a rough ride. I do hope, and indeed expect, that you will improve steadily. It is just rough it takes so long to get the appitite back.

Keep pressing ahead! May 2013 be a really good year.

Lots of love.

Mavis xx

[mhnevillParticipant]

Hi Babs

I want to salute you and all those who take part in these Trials. You do such stirling work for all of us. I just hope that, following on all the horific side effects, that your drug combination does bring on a long remission for you.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Terry

Like Jean, I can't offer any information but just wanted to show some solidarity to you in your struggle. Do hope the funding comes through and the Bendamustine does the trick. I know Dai is starting on it soon so should be able to give you some feed-back eventually.

Congratulations at keeping on with the car restoration – she looks a beauty, ddon't think I have seen one like it. I'm not sure I would be able to keep working at if I had to cope with all you are.

Lots of best wishes!!

Mavis

[mhnevillParticipant]

Hi Dai

What you say seems so much sense. I wonder how we can make this particular opinion heard. Is this something Myeloma UK could help us with.

In the USA they have telephone ring rounds with Consultants where such issues can be raised. I guess that here the Consultants are so over-worked that they haven't the time for such luxeries. I sometimes wonder if our Consultants even have the time to read the research when they are holding such wide briefs. Is just my thought, or do most of our Consultants look after Lukemia patients and others with Blood disorders?

Best wishes.

Mavis

[mhnevillParticipant]

Dear Emma

Glad to hear that a pathway has been decided for your Mum, and that, although not the brightest news to be in hospital for four months, at least she will be in the "safe" place.

Do hope the chemo does its magic during this time of waiting.

Lots of love to all the family.

Mavis x

[mhnevillParticipant]

Hi Peter

Thanks for the post. I shall look forward to hearing the link when the lounge is Christmas preparations free! Gordon has just put the first forty lights on our tree!!

I am always interested in what Dr Berenson has to say on this subject. I am one of the "less is more" folk and decided against pressing for a SCT. I guess age has something to do with it, also other health complications. I think that what will help this debate is the DNA profiling experimentation. I expect SCT are more effective with some paths of MM than others.

I also thing SCT takes a lot of commitment on the part of partners and I'm not sure Gordon could cope with it all when he has his own health issues.

I am always rootiung for those going throuh SCTs and especially those of you brave enough to have a donnor transplant.

All best wishes to you Peter on your chosen path.

Mavis

[mhnevillParticipant]

Dear Dai

At last some really good news from you. I couldn't be more pleased. You so deserve for things to go well now and I hope that Bendamustine breaks all records in its positive effects on your MM.

AND, I know what you mean about keeping Revlimid in the back of your mind for the future, but hopefully, after the Bendamustine you won't need maintenance. I do think that sometimes, we as patients, have a better idea of what suits us. I have a very good feeling about Thalidomine and feel sure it was what helped kick my PPs into touch.

All best wishes and prayers. Will especially keep you and Janet in my thoughts over this Christmas.

Love Mavis x

[mhnevillParticipant]

Dear Jet

Have been following your campaign. Do hope the desired young potential donors are rsponding.

And from a Christian, Happy Christmas!!!

Much love.

Mavis x

[mhnevillParticipant]

Dear Michelle

What marvellous news. I do hope and pray you continue PP free for many years to come.

Have a very special Christmas.

Love Mavis x

[mhnevillParticipant]

Hi Wendy

Can understand your worries. Strange to be saying that I hope it is something like arthritis which I assume attacks folk with MM as well as others.

I get lots of bone pain and most are my arthritis, although I am riddled with lessions in my bones, including in my head! Trouble is, I find taking too many pain killers causes worse constipation so it is a viscious circle. I think this very cold weather doesn't help, but it might be in my imagination.

Hope the news is "good" for you.

Love

Mavis x

[mhnevillParticipant]

Dear Mike

Just hope you have a lovely time with your family over Christmas to give you something to hold onto when you are having a grim time in the New Year.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Tom

May I, alonside everyone else, welcome you to this Site – sorry you have had to join – so young too.

I am 67yrs and, like you, had a plasmacytoma needing surgery followed by radiotherepy. I them had approx 16 months before next crash! Then followed six cycles of CDT. I am now PP free and hoping for a long remission and working on my mobility! I am not going down the route of SCT, but I wish you all the best for your treatment. I can understand, that at your age, you will, on your Consultant's advice, want to throw everything at this wretched disease.

All very best wishes.

Mavis
Mavis

[mhnevillParticipant]

Hi Emma

Sorry your Mum is having such a grim time. I can understand where she is coming from about quality of life.

One thing, as they have already identified blood clots they will be extra careful in any procedures. I have had four hip ops – at least they can do them by epiduaral. I had such dire warnings before my forth operation (I was very over weight and had blood pressure issues,) that I altered my will and transferred money to my husband. However, I still wanted to go ahead just because of those quality of life issues. I would rather have died than carried on as I was. Fortunately I survived and that was eight years ago. Little did I know I had MM waiting in the wings, but such is life!!!!

We all have to make our own decisions and take our own risks, BUT these decisions are VERY difficult so I feel for your Mum and all the family.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Tom

Happy many returns for your stem cells!!!!

Thank you for your unfailing cheerfulness.

Best wishes.

Mavis x

[mhnevillParticipant]

Hi Dai

Just caught up with your news. Sory about the Revlimid, but maybe the Bendamustine will be even better for you. You say that you have only had eight months from Rev, but in fact you are still going strong – well strong in the fight anyway.

Hope the Thalidomide doesn't cause problems this time.

Rooting for you as always. I'm certain you will be round for a long while yet.

Best wishes.

Mavis x

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